December 4, 2014
it is official I am listed for double lung transplant
November 22, 2014
well I am aproved by the lung transplant team this coming up Monday november 24 I will have the sniff test plus surgeon appointment plus last details for to be listed with God will those lungs well come, very soon.
November 7, 2014
new update my numbers are ready to add me to the transplant list, my Fvc are 44 my dlco are 22 and my oxygen level when I am walking goes to 82 however in rest I can still use 2 litters
October 26, 2014
well went to NIH on October 19 into the 24 , found out that my lungs capacity went down from 51 on July to 44 at this moment . I had been notice the changes but I know they need to happen, lord help me and many like me with strength and courage.
October 15, 2014
Still slow changes but had notice the tired I get when I am walking. Going to do the yearly transplant upgrade testing.
September 8, 2014
today is cool at NYC however, I am so tired. Yesterday did a mile walk got home and the oxygen level went to 83 with 3 liters of oxygen. I got home took a shower and went to take a long nape.on the month of October going to national institute of health for a yearly check up. Going to do some test for the lung transplant program.
September 1, 2014
today it is very humid at New York I went to shop some things for the week I only walk four blocks honestly I got back home with out breath
August 26, 2014
had been noticing changes little by little now when I go walking or try to do some cleaning or even washing the dishes I need to put the oxygen at 3 liters. Is ok I know this will happen needs to happen the only thing I am a little worry when the moment come when I can't do nothing by my self how we going to manège. Only God knows.
August 11, 2014
yesterday I walk a mile even that my oxygen level went down to 82 and had to rest a little to continue but as the lung transplant sabido need to keep moving stay strong.
August 7, 2014
yesterday went a all day appointment PFT my FVC is at 51% also my DLCO is at 24% , did the 6 minute walk with 3 litters of oxygen and my number went from 96 to 86 , my echocardiogram show some pulmonary hypertension at NIH they already told me it is mild. Pulmonologist was not worry because that is expected to happen even the lung transplant doctor sad the same thing. I am tired but happy that at list I still can walk
July 28, 2014
on the 6 of august I have a long day PFT test 6 minutes walk echocardiogram and pulmonologist I will post the results. Thanks God even that today I am very tired. But continue moving.
July 15, 2014
into to now I been noticing changes slowly my breathing is more difficult, love to walk but I need to use the oxygen between 3 to 4 litters but at rest I am between 2 to 3. Still strong, faith and spirit still high, hopes are always there, but enjoy every little moment of life.
July 11, 2014
Today I wake up with pain in the back even I went for a small walk. I got back home very short of breath.
July 6, 2014
Today I had walk two hours with my husband it is true that neede to rest 3 times but as the lung transplant doctor said need to keep active. Notice that I am slowing little buy little but however that are one of the changes that will happen.
July 3, 2014
Yesterday went to the lung transplant center for a follow up, Catherine doctor are watching me very closely for many reasons I can have a drastic change but into now I still stable doing what needed to be done.
July 1, 2014
Tomorrow is a follow up at the lung transplant center at Columbia prevesterian hospital at 168 street New York NY. I been up to now stable but my PFT slowly going down those this is a good thing yes but at the same bad.what ever is going to happen is up to God he is the one in control.
June 24, 2014
I am mother of two adult sons, I have a rare diseases call Hermansky - Pudlak Sydrome better know as HPS , this diseases had been found in many countries but is most people that has it are from Puerto Rico in the albinism community. I have the type 1 of HPS that causes pulmonary fibrosis. At this point of my life I am accepted at Columbia Prevesterian lung transplant center, we are in need to have funds for surgery and after surgery. My faith is big and my hope to get better and see grand kids and enjoy retirement by the side of my dear husband. Every Pennie counts, every help is value for us. My your heart and love for life is as big as my.God bless you all always and thank you for your help.
